Jan was a gem, a dedicated child welfare case manager. With knowledge of maternal alcohol use during pregnancy, she drove four young foster children 85 miles to see the state’s leading geneticist. She suspected trauma in the womb. And she wanted confirmation of Fetal Alcohol Spectrum Disorder (FASD).
Most importantly, she wanted accurate and up-to-date information for the family that would adopt them. Most children in the child welfare system aren’t so lucky.
One by one, each sibling received a Fetal Alcohol Syndrome diagnosis. The year was 1997.
One year later I adopted the bunch. I had done my research. Although the brain damage from exposure to alcohol in utero is permanent, I refused to accept that fact.
Wouldn’t lots of nurturing at home make a difference? Couldn’t best practices at school ease the impact?
Well, they did.
They made them feel safe. They minimized the repeated failure that is so common with Fetal Alcohol Spectrum Disorder. They reduced the all-too-common secondary (or acquired) conditions of school suspensions, substance abuse and juvenile detention.
But the brain damage remained.
The Long Journey
My sons Andrew and Michael took the biggest hits, because their birth mother self-medicated her depression with alcohol throughout both pregnancies. Blacking out was a weekly occurrence.
With IQs hovering in the 60 range (more than two standard deviations below the average of 100), learning became incredibly difficult for both by third grade. Their progress lagged behind their peers, in spite of high structure. In spite of repetitive instruction.
They did inch forward – just incredibly slow, unable to consistently build upon previous knowledge. Some days they could remember previous lessons. On other days they couldn’t retrieve the information – temporarily lost in their damaged brains.
And how they tried to behave. But so many rules and procedures to follow, coupled with sensory issues related to FASD. The two were easily overwhelmed by noise, crowded areas and all the stuff surrounding them in the classroom.
Don’t touch everything. Don’t talk so loud. Don’t rock your chair.
By high school Andrew’s reading fluency reached a reasonable mark, but his comprehension skills remained stuck at a second grade level. For Michael math was nearly impossible. His brain simply couldn’t process multiple-step problems.
Neither could ever grasp an analog clock. Fractions never made sense.
“They did inch forward – just incredibly slow.”
With less maternal alcohol use, my daughter Ashley and youngest son Brandon fared better. Most likely because their birth mother was detained for part of their pregnancies. First as a juvenile. Later as a adult.
Their IQs are in the 90s – slightly below average.
However, passing high school algebra and geometry took serious effort. Long sessions at the kitchen table every night to understand. Many meltdowns. Loads of patience on my part to re-teach. And without the accommodations in their Individual Education Program, they would have failed every test. A list of formulas and examples enabled them to apply their knowledge.
Because Ashley and Brandon acted like other kids most of the time, some teachers judged harshly when they struggled. After all, their disability appeared invisible. Yet the damage to their brains was very real.
Lazy was a word often used to describe my children. The truth was their brains processed language and visual information at a slower rate than most. And not always correctly. Developmental trauma does that.
Disabled yet capable.
Able to learn – but differently.
Nevertheless, all four were creative. They enjoyed art and music immensely, especially when teachers allowed them flexibility to explore possibilities. Color outside the lines.
Each played the violin for six years – mastering the instrument by ear and finger placement, since reading notes quickly and accurately wasn’t possible. Thankfully their instructor threw his usual strategies out the window and started fresh.
Organization was, well, disorganized. Their brains didn’t see things the same as mine, due to a lack of working memory. Order was a relative term, not absolute. The fewer things the better. One less object to become lost – and found months later in a totally illogical place.
All struggled with friendships. Several more than the others because they misinterpreted social cues. By trusting too quickly, their peers frequently took advantage. Few returned the same kindness. Over time my children preferred the predictability of being alone – rather than the risk of being ostracized. Each refused to be a target for bullies.
At least they had each other. Home was a place of comfort, a place to release pent up emotions that they worked very hard to suppress at school.
Why all the challenges?
Consistent with a Fetal Alcohol Spectrum Disorder diagnosis, my sons and daughter had significant deficits in cause and effect thinking. Huge! Regardless of meaningful consequences to teach necessary skills, they repeated the same behaviors over and over. And over again. In other words, they couldn’t learn from their mistakes.
Sad but true. All related to FASD.
Numerous discipline reports at school. Regular suspensions, in school and out. Even a couple of expulsion hearings that forced administrators to finally change their tone – and their approach.
Shaming them to behave created instant frustration. That led to debilitating anxiety.
At the end of the day, prevention was the key – along with constant, compassionate yet not overbearing supervision that provided an external brain. That intense, ongoing support reinforced my children’s ability to pause and think, rather than react impulsively. It still does today as young adults, whether at home or in the community.
Unfortunately, only one obtained a high school diploma. The others couldn’t pass high-stakes tests.
But none are in prison. And two have jobs that push them to the limit mentally – everyday. Thank goodness for the Americans with Disabilities Act and the accommodations it affords.
Moreover, access to affordable, regular medical and mental health care is imperative. Lifetime expenses for my most affected child have exceeded $1 million.
It is what it is
Even with the FASD diagnoses, some medical doctors weren’t aware. Some totally ignorant. Three of my children were later diagnosed with bipolar disorder, without showing typical symptoms. Other professionals assumed two to be on the autism spectrum. They’re not. Psychotropic medication reduced but didn’t eliminate the ADHD-like symptoms associated with FASD.
Sorry folks, their condition has a name. It’s Fetal Alcohol Spectrum Disorder. Trauma before birth. In the womb. Yet entirely preventable when a pregnant woman abstains from alcohol.
Yes, 20 years have indeed passed since my children’s diagnoses. While their coping mechanisms did increase – along with emotional maturity, their brain damage didn’t decrease.
Rather than focusing on what they couldn’t do, I urged my children to focus on what they could do. Their strengths. Their passions. Fashion for Ashley. Running for Andrew. Singing for Michael. Film production for Brandon.
Positive self-esteem is great therapy for anyone, especially for individuals who don’t readily fit the mold.
Meanwhile, millions of pregnant women aren’t heeding the message about not drinking alcohol. In fact, the problem continues to grow. A true public health crisis in the United States and abroad. And it affects all races and socioeconomic groups – with Ireland and South Africa being two of the worst.
That’s not anyone’s definition of progress – especially for the child or young adult who lives with FASD every day.
Let’s bear the responsibility to spread the word. Let’s confront irresponsible behavior during pregnancy.
No doubt, the outcome for my children could have been different.
And countless more just like them.